Mammography and Mortality Study: What Does It All Really Mean?

Like nearly all of us with a breast cancer history, I’ve read (quite a lot, maybe too much) about the now-infamous latest study on mammography and mortality, published July 6, 2015 in JAMA. If you want to slog through the original, it’s at this link: Breast Cancer Screening, Incidence, and Mortality Across US Counties.

Like many of you, I imagine, it makes my brain hurt. In particular, the study appears to have the most disturbing implications for those of us at either end of the breast cancer spectrum, namely, those of us initially diagnosed with DCIS, and those of us initially diagnosed with advanced and metastatic breast cancer. For women like myself, who were diagnosed with and treated for DCIS, we have to wonder if the whole blasted sleighride was pointless and unnecessary. For those whose initial diagnosis was late stage breast cancer and even metastatic breast cancer, we must all feel shock, dismay and extreme frustration that these cancers were not detected earlier. How is that even possible? What the everloving heck??

Earlier this week, I was contacted by a journalist to ask me if I’d be willing to be interviewed about it. She had already reported on the study when it was published, and was looking to talk to a few folks who’ve been diagnosed with breast cancer to discuss our reactions. At first, I wasn’t sure I was up to it. But I decided to agree, after checking out the journalist herself and the magazine for which she writes. That interview was scheduled for today, but it’s been postponed while she and her editor do some further thinking about the direction of the piece. The good thing about agreeing to be interviewed was that it forced me to pull some of my thoughts together. And I decided to share them here. I am frankly not equal to reinterpreting the study directly. But now that I have read the thing, as well as reports on it, a number of issues — old issues, in fact — have been brought to my mind that have been reinforced by my reading, issues I hope do not get lost in the fray.

Non-Invasive Breast Cancer: Overscreened and Overtreated?

Frankly, I’m a little tired of all the flap in recent years about DCIS. When I was diagnosed with DCIS in 2008, I did get pathology reports that interpreted the nuclear grade of my lesions. But the implications of these grades was still fuzzy at the time, and my reports did not all say the same thing. The only thing they stated unambiguously was that none of my lesions were low grade, and that they were somewhat widely scattered. This NEJM study report, published about six months after I was diagnosed, stated that both high nuclear grade lesions and widely scattered lesions were found to be more likely to recur invasively. It also reported that 13% to 24% of women who got stereotactic biopsies of DCIS lesions were found to have invasive cancer in those biopsies. Another study, published after I had surgery and was just finishing radiation, identified new genes in DCIS lesions that were potentially involved in the malignant transformation of DCIS. So, that’s the state of play I and my doctors were dealing with back then.

In the years since, pinpointing which DCIS lesions may turn invasive — and which probably won’t — has been the subject of much research that has yet to achieve certainty. So far, researchers have only been able to determine that some DCIS can and does become invasive if left untreated, and that even if treated, can and does recur in invasive form. But widespread agreement on how to predict its behavior has yet to arrive. A lot has been written about the overtreatment of many, if not most, DCIS lesions, and the trauma attendant to this overtreatment, up to and including women who opt for having bilateral mastectomies. While I would be the first to admit that I would gladly have avoided my entire treatment extravaganza and its aftermath, until we know for certain how to assess DCIS thoroughly and accurately, much of the flap about it, including whether to call it cancer or not, strikes me as premature, if not downright unhelpful. To quote Dr. David Gorski, a surgical oncologist better known to fans of his blog as Orac:

We can overcome the problems of overdiagnosis and overtreatment due to cancer screening. Developing better screening tests will not be sufficient to achieve this end, however. What will be required is the development of predictive tests that tell us which lesions found on mammography or future screening tests are likely to progress within the patient’s lifetime to cause death or serious harm and which are unlikely to do so. Such information would allow us to stratify cancers into those that need to be treated promptly and those that can safely undergo “watchful waiting.” This will not be an easy task. In the meantime, we do the best we can with the data that we have—and its uncertainty.

Couldn’t have said it better myself. In the meantime, could everyone please drop the hype and hyperbole about DCIS? I don’t know about anyone else, but it has not made me feel any better. The long-term damage that I live with since being treated for DCIS was not caused by the fact that the stinking calcifications, whatever their potential for invasive recurrence, are gone and have thankfully stayed gone for seven years. It was caused by the collateral damage and long-term side effects of the treatment that made them gone, and it’s the sort of damage that every cancer patient endures, not just those of us with DCIS. In the meantime, I can happily live without being subjected to further shrill, ill-considered discussion of DCIS. To quote Shakespeare, “it is a tale/Told by an idiot, full of sound and fury,/Signifying nothing.”

And What About That Collateral Damage?

This has been the subject of many, if not most, of my blog posts. We all know what it is. Virtually all of us have some. There is more research these days, but probably not enough research, in my humble opinion, about how to mitigate it after the fact, make it disappear entirely, understand it in the first place, or even how to get oncologists and other physicians to acknowledge that it bloody exists at all. Thank goodness, there is also more research being conducted these days about how to avoid it. Which leads me to my next topic.

Could We Have Better Treatment, Please?

Another blog post. Or six. Better treatment means more targeted therapies; less collateral damage; smarter drugs with fewer side effects; better surgical techniques; better access to clinical trials; better sharing of data; more accurate statistics for all types of breast cancer; better tumor tissue registries; better health insurance and healthcare access; better treatment protocols; improved standards of cancer care; treatment and drugs that do not bankrupt the people they are supposed to be helping; etc., etc., ad infinitum.

Better-Trained Radiologists?

Not unexpectedly, many of the objections to and criticisms of this mammography study, as well as others that have questioned its efficacy, have come from radiologists themselves. However, as many of them would admit, not all radiologists are created equal, nor are they all as well-trained and experienced as they ought to be. It is documented elsewhere (another blog post in the making) that American radiologists do not employ the same criteria for mammographic interpretation as, for instance, their colleagues in Europe. That includes the interpretation and follow-up of findings for dense breast tissue. I have also read articles stating that European radiologists report fewer false positives than their American counterparts, suggesting that they read breast images more accurately in the first place. My own current breast surgeon shakes his head in disgust at the local disparity of competence among clinicians, not only in the interpretation of mammograms, but of MRIs and breast ultrasounds. Come on, people. Don’t we have enough certifying organizations in the U.S. that define competency and provide continuing education to get you all up to speed? Oy.

Better Imaging Tools

Let’s face it: mammograms are so last century. And while there may be criteria for suggesting when to follow up a mammogram with something else — like diagnostic or 3D mammography, MRI or ultrasound — that doesn’t mean that these criteria are consistently followed, or that the imaging is conducted competently, or that these options are even readily available to all. There still continues to be disagreement about the efficacy and accuracy of these tools, along with breast thermography and nuclear imaging. Seriously? This is 2015, and we still don’t have better imaging tools? What’s up with that?

Other Screening & Diagnostic Tools

Lots of research is being done to develop predictive and diagnostic blood tests. Very interesting, very promising. Fingers crossed. Here are some links:

Blood Tests to Detect Breast Cancer & Monitor Response to Treatment

New Test Predicts Breast Cancer Recurrence

Blood Test Could Be More Accurate Than Mammograms

Blood Test Can Predict Breast Cancer Before Occurrence

Blood Test Shows Promise in Breast Cancer Detection

The Really Bad News

For me, the most alarming, unbelievable, disheartening and intolerable implications of the mammography and mortality study are these two: (1) that, apparently, more mammograms did not result in fewer deaths from breast cancer, perhaps because (2) more mammograms did not lead to finding fewer incidences of advanced and metastatic breast cancer, which one might expect if all this stepped-up screening was working as promised.

The first of these conclusions is a thorny subject, rife with a variety of interpretations and disagreements, and must be understood within the context of the study limits and parameters. The study’s researchers have themselves taken some pains to make these clear. So has Dr. Gorski, aka Orac. In the first place, the study subjects were diagnosed in the year 2000, and a lot has changed since then. Also, other similar longitudinal studies of mammography and the reviewers who have interpreted them have come to very different conclusions. However, the tendency of these types of studies in recent years has been to support the conclusion that mammography has not decreased breast cancer deaths, or not enough deaths to justify using it as widely as we have been used to for many years now. The controversial 2009 recommendations published by the U.S. Preventative Services Task Force are themselves undergoing revision, but appear at this point to mirror the mortality study — namely, mammography is still useful, but not as useful as we thought. And it’s really not so useful to women under age 50, usually not even mentioned to women under age 40 unless they have a family history, and that individuals must discuss the whole thing with their doctors, who themselves may not know what to conclude. But, it’s what we’ve got, and we can’t go tossing it out until we have something to replace it. Great.

Where does this leave all of us? Where does it leave women without a family history, who develop metastatic breast cancer in their thirties? Where does it leave minority women, who tend to develop more aggressive forms of breast cancer at a younger age? Up the blasted creek?

It seems to me that we are left almost exactly where I concluded we were left a few years ago: stuck with diagnostic tools that are flawed and inadequate; making the best of treatment that is imperfect, damaging, and too costly in every sense of the word; and very much in need of a far deeper understanding of a complex, still-deadly disease.


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Cancer Brain Drain: My Life Is Still A Mess

Seven Years Later…

It’s nearly seven years to the day that I was diagnosed with breast cancer. I’m still here, still NED, as far as I know, so in that regard, seven is a lucky number. However, I’d rather hoped that by now, I would feel a lot more like my old self again. I think I’ve accepted the fact that I will never feel exactly like my old self again. I just thought I’d feel better than this.

I do feel better. I think. That’s the problem, though. I’m not sure I can tell anymore. My ability to think has changed so much, I’m not sure I can trust my self-analysis. I’ve gotten so used to adjusting (lowering) my expectations for my mental and physical stamina, pretty much on an hourly basis, that I can’t tell for sure if my stamina is really any better than it was, say, two years ago, or if my expectations have declined so much that I don’t remember what normal stamina feels like anymore.

In some ways, I wonder if I’ve gotten worse. I decided to write this post because it bothers me that I haven’t been able to write as many posts as I’d like. It’s not for lack of subject matter. I have about a dozen topics on my prospective-post list, many of them partially researched. But getting myself geared up to sit down and write them? That seems to be harder than it used to be.

The big question is why. I think I know the answer. In an article by Dr. Frances Goodhart, clinical psychologist and author of The Cancer Survivor’s Companion, she suggests that the way to deal with decreased mental and physical stamina is to employ “the “3 Ps” – prioritise, plan and pace yourself.” Believe me, I could write my own book on this subject, if I weren’t still such a train wreck. I’ve been prioritising, planning and pacing myself on an almost constant basis for the past seven years. But my priorities have had to change in the last few years. A lot.

There are four factors that have made my life with cancer’s aftermath more challenging all along, but much moreso recently. In the first place, I’m single. Therefore, I have only one income on which to live — mine. Which leads to the second factor, my demanding, draining, satisfying yet often frustrating job as a homecare physical therapist. I do not have a partner, spouse, butler, personal assistant, trust fund, living parents or anyone else who is contributing to paying the bills or maintaining my existence on a regular basis. And but for a brief, insane few months right after I returned to work when acute treatment was done, I haven’t been able to work full time for over six years now. So, that’s factor number three — living on one fifth less income than I used to. The last factor is that I own a house. It’s a small house, with a small yard, but it still requires upkeep. We won’t even mention the car.

For a long time, I didn’t really have the wherewithal to deal with factor number four in any consistent way. Just crawling to work each day, helping solve other people’s health problems, and then crawling home was about all I could manage. For most of the past six years, I had to take neurostimulants to get through each work day, otherwise I was exhausted by mid-morning. When I got home, I could just about feed the pets and myself, make sure I had something clean to wear to work the next day, and crawl into bed. I’d sleep for ten to twelve hours, then do it all over again the next day. If I hadn’t set up automatic bill payment online, most of my bills would probably not have gotten paid on time. If I weren’t a physical therapist, and therefore spent my work days exercising and walking with my patients, and schlepping through parking lots with my heavy work bag, and climbing stairs in apartment buildings, I probably wouldn’t have gotten much exercise either. On my days off, sometimes I was able to channel my frustration, my need for answers, my outrage at pinksploitation, and my sense of the absurd viscissitudes of breast cancer into blog posts. I felt a lot of frustration and outrage. I wrote a lot of snarky blog posts. Meanwhile, my sweet, innocent, neglected little house looked more and more like a trash pit.

And then I got frustrated with the mess. And my job got harder, because working in healthcare has gotten harder. Ergo, I had to shift my priorities. Ergo, more of my limited energy got spent on shoveling out the trash pit, and on trying to sharpen my ailing mental abilities for my job and my patients. And consequently, I had a lot less energy left over to channel my ongoing outrage about breast cancer and turn it into blog posts. Snark needs pep, and my pep was pooped.

Some of my blog pals have been writing posts this past week describing ’15 Random Things About Myself.’ I’ve enjoyed reading them. Trouble is, it takes most of my effort these days to remember fifteen non-random things about myself. I remember my name and address. I still have to think about my phone number sometimes, because it’s not one of those nifty numeric patterns that makes it easy to recall. I remember how to drive, and with a little planning, how to get to my patients’ homes. Mostly, I remember how to do my job. I’m still learning how to deal with being a homeowner. Last winter’s ungodly record-breaking snowfall here taught me things I never knew about homeownership, the consequences of which I am still tackling. I am constantly worried about money and the personal inadequacy thereof. I also make a concerted effort to remember my friends and all the bat excrement they are dealing with. That’s about all I can handle.

Since the beginning of this year, pursuant to shoveling out the trash pit that is my house, I estimated that I must have shredded or otherwise disposed of about 400 or so cubic feet of old paper records and junk mail. A lot of this was shoved into bags or boxes that occupied every room in my house except the bathroom. It was thus arranged because I haven’t been able to cope with it until this year. Most of it was in the room I use as my art studio. However, I had to get it out of the way because I have to have my home insulation upgraded. And in order for the crew to do this, they have to be able to walk from room to room. With ladders and tools and rolls of insulation. And they have to be able to get into the attic. And I have two attics, one over the main house, and one over the converted garage that is my art studio. Oh, and they also have to get at the foundation sills in the basement. So, this entire project was no mean feat. And that was only one part of it, because it also meant that I had to clean out my drawers and closets to get rid of the clothes that I don’t wear anymore, that were hanging on door hooks or folded up or bagged in various parts of the house, because they didn’t fit into my limited closet space. I’ve made a lot of progress. I’m also not done, but I’m about done enough to arrange for the crew to start. I cannot even begin to describe how much mental and physical exertion this has entailed. I find I can last for about 45 minutes before I have to stop and lie down again. Sometimes, I can manage about three or four of these sessions in a day. Sometimes, I can’t manage any at all.

My hope is that, by the beginning of this winter, I will have a much tidier and better-insulated house, with a lot less stuff in it. Then, maybe I can spend less time dealing with it and more time writing and drawing and channelling snark into this blog. I’ll let you know how it goes. Life is complicated. I need a nap.

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Nurse Navigators for Cancer Patients: Do They Help?

When I was diagnosed with breast cancer in 2008, I felt like I was stepping down an indifferently-lit staircase into the Vast Unknown. At the time, the notion of nurse navigators was relatively new in my locale, and there were as yet none available. I could have used one. There was a dedicated breast health center, where clinicians from all the area hospitals who treated breast cancer could see their patients, along with a multi-hospital weekly tumor board where they could discuss treatment plans. Thus, my breast cancer surgeon, my radiation oncologist and my medical oncologist each worked for different hospitals, but I could see them in the same area and coordinate communication with them through the breast health center. Theoretically, that is. In practice, things didn’t work out that way. Instead, as I struggled to make treatment decisions, I also struggled with poor access, poor communication, poor coordination, and incomplete information. If I’d had a nurse navigator, she might have smoothed some of the bumps.

Now, as a homecare physical therapist with a specialty in oncology rehab, I deal with oncology nurses and nurse navigators regularly, from various cancer treatment centers. And they do help, especially when I or my patient just doesn’t know who the heck to call about a particular issue. But the road to coordinated cancer care is still bumpy for many patients.

When I began doing some research for this post, I was surprised to learn that the concept of cancer patient navigators was first conceived in 1990 by Dr. Harold Freeman and his colleagues at New York’s Harlem Hospital [Efficacy of Oncology Nurse Navigators]. And in practice, oncology nurse navigators have been around since the late 1990’s [Report on a Study on the Role of the Oncology Nurse Navigator]. Since then, defining their role has been a complex, ongoing issue, as well as defining the knowledge they need to perform their jobs. To add to the challenge, not all cancer patient navigators are specially-trained nurses, and some are not nurses or even clinicians. Some navigators are social workers, and some are lay people. As such, they may fulfill somewhat different roles in cancer care. In a study published in February, 2012 in the Journal of Health Care for the Poor and Underserved [Cancer Patient Navigators & Their Role in Cancer Care], the role of a navigator is defined as “an individual trained to help identify and resolve real and perceived barriers to care, enabling patients to adhere to care recommendations and thus improve their cancer outcomes.” These barriers may be economic, as well as lack of access to basic information about symptoms and preventative care. Thus, navigators may play a role across the spectrum, from screening to acute cancer treatment, to palliative care and survivorship care.

Recognizing this need to improve cancer care and to reduce cancer incidence and treatment disparities in the U.S. healthcare system, in 2007, the National Cancer Institute launched a pilot program [NCI Community Cancer Centers Program] in community hospital-based cancer centers to “support cancer research and enhance the quality of cancer care at the nation’s community hospitals.” Part of this program was to require cancer patient navigators. The hospitals that have taken part in this program have been studying ways to:

•Reduce cancer healthcare disparities
•Increase patient participation in clinical trials
•Improve quality of cancer care
•Enhance cancer survivorship and palliative care services
•Expand use of electronic health records and connect to cancer research data networks
•Promote collection of high-quality biospecimens to support genomically-informed research (also known as personalized medicine) [quoted from the previous link]

In 2014, this program was replaced with the NCI Community Oncology Research Program in order to “conduct multi-site cancer clinical trials and studies in diverse populations in community-based healthcare systems across the United States and Puerto Rico” in order to allow “access to a larger and more diverse patient population in a variety of ‘real world’ healthcare locations.” Meanwhile, cancer patient navigation continues, as well as efforts to refine the definition of the navigator’s role and the knowledge base needed by oncology nurse navigators in order to perform their jobs.

So, what do they do? Here’s a summary from Cancer Patient Navigators & Their Role in Cancer Care:

In my clinical experience with navigators, particularly nurse navigators, what they generally do when one of my patients has been diagnosed with cancer is to accompany them to each doctor visit, to help fill in the blanks about their treatment options and the potential risk vs. benefit of each option, to provide emotional support and facilitate practical support, to help coordinate care, and to serve as a go-to person when problems arise. In particular, I think one of most meaningful roles they can play is to help ensure that patients understand their treatment options and understands their efficacy and potential harms. I say this because I find that it is still too often the case that cancer physicians themselves either do not have the time to explain everything and answer all questions, or that they present only one treatment recommendation and do not inform the patient that there may be others. Patients are usually and understandably so overwhelmed and shocked by the reality of their diagnosis, they don’t even realize sometimes that they have a right to ask questions. Many patients are intimidated by questioning their doctors at all and may not feel brave enough to disagree with them or insist that their doctors address quality of life issues. A nurse navigator can really make a difference in such situations, so that the patient can arrive at treatment decisions that are truly informed.

Not all oncologists are alike, nor are navigators. Recently, I came across an article [You Have Nothing to Lose] by Lee Newcomer, who runs a cancer care center, about how an oncologist recommended treatment to a friend’s wife that did not reflect complete and current evidence-based information about this woman’s particular breast cancer. It underscored how important it is to have a thorough and honest discussion about risks versus benefits of treatment, and of the need to get a second opinion. We all want to be able to trust our doctors, but we also want the best treatment for us as individuals, with a full consideration of the impact of treatment on our lives. I could write another post entirely about recommended best practices for oncologists.

Also recently, I discovered that two of the navigators I deal with, who work in the same cancer center, see their roles differently. One of them tends to stick to the party line, as it were, explaining the side effects and efficacy of the particular treatment an oncologist recommends, but not offering information about other options that the oncologist may not have mentioned. The other is much more likely to encourage a patient to get a second opinion, to outline other options, and to emphasize that the patient has the right to disagree, question and be fully informed before making any decisions. It can be uncomfortable for nurse navigators to know that a certain oncologist, with whom they must regularly interact, may not be disclosing all the information a given patient needs for informed consent. It’s important for all navigators to have a consistent understanding of their role, as well as the support and education they themselves need to fulfill that role.

Another incident occurred recently when a patient attended her first chemo infusion. Her chemo nurse found that this patient had only a rudimentary understanding of the potential side effects of each of the drugs in her chemo cocktail, and immediately called a pharmacist to the scene to help her explain them to this patient and to the family member who accompanied her. This patient had a navigator, but somehow did not understand what she needed to deal with the treatment she was about to undergo. There can be a lot of reasons for this. As many of you know, it’s extraordinarily difficult to obtain and understand all the information you might need to make treatment decisions, and to understand all the ramifications of those decisions. It often feels like we are required to take, in effect, a crash course in clinical oncology in order to understand what is going on. Not every patient is equal to such a task, nor are her family members. Many patients still prefer to just leave all the decisions up to their doctors and endure the consequences.

In the meantime, researchers continue to study the efficacy of oncology nurse navigators, sometimes struggling to come up with parameters that truly reflect the value of the role they may play in cancer care. One such study reviewed the current research on this subject [Efficacy of Oncology Nurse Navigators]. Looking at 18 studies, it organized data by “rationale for implementation of nurse as navigator, study patient populations, navigator educational preparation, and measurable patient outcomes such as the time to diagnosis and treatment, effect on mood states, satisfaction, support, continuity of care, and cost.” Among other things, it outlined the difficulty of measuring navigator effectiveness in terms of cost of care, but also found that “nurse interaction with patients and families to mutually identify unmet needs; inform, teach, and support; and coordinate and promote the continuity of care” represent a valuable service that can improve patients’ experience of treatment and its outcomes.

I hope those of you who have had a patient navigator will comment and share your experience, and that those of you who did not have one will share how a navigator might have improved your experience. Personally, I think we need all the help we can get.


All the links mentioned in this article, plus some resources, are listed below.

Academy of Oncology Nurse & Patient Navigators

Cancer Patient Navigators & Their Role in Cancer Care

Delineating the role of the Oncology Nurse Navigator

Efficacy of Oncology Nurse Navigators

NCI Community Cancer Centers Program

NCI Community Oncology Research Program

National Comprehensive Cancer Network Patient Guidelines by Cancer Type

Report on a Study on the Role of the Oncology Nurse Navigator

You Have Nothing to Lose


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Nineteen Seventy-Three: A Memory

It’s Memorial Day weekend, and I was thinking about all the veterans I’ve known over the years, starting with my dad, who was probably the first veteran I knew personally. Eventually, I came to remember one named Kevin. And started writing this. Wherever you are now, Kev, all these decades later, I hope you’re okay.
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1973

Make love, not war
was what everyone said
back then, becoming, when we met,
our private joke, our secret portent,
you, in fact, a big man on campus,
six foot five in sneakers,
me, six foot two in platform shoes,
dancing.
Was it only that
it was easy for us
to see each other
above the crowd?
I used to joke
that I was drawn to you
because you were ‘an older man,’
not by much, but still,
twenty-four was ‘old’
for a sophomore.
Hah, you’d say,
only decent thing they did
since they signed you up
for the Marines,
sent you to ‘Nam,
scrambled your brains,
and discharged you, honorably,
least they could do
was pay for college
so you could try
to fill your head
with something else.

And so we made
love not war,
time and again,
you like a blanket
over me, muscle, sinew, skin,
listening
to Pink Floyd’s latest album,
over and over,
those apt lyrics,
those soaring vocals
matching our urgent
heartbeats, our quickened breath
wave for wave, until we crashed
into climax, your body melting
onto mine, when suddenly,
your psyche —
triggered perhaps by heat,
sweat,
adrenaline,
our tropical explosion —
would steal away,
your head,
filled again
with dark forebodings,
and I would be alone
with your body, now empty
as a spent mortar shell,
while the music played
‘I’ll see you on the dark side
of the moon.’

We didn’t have
a name for it then.
Shell shock
was the old name from
the war to end all wars.
You never told me
where you went
but I guessed
the general locale if not
the wretched details. I didn’t want
to think too much
about why
it was our coupling
that sent you off,
too frightened
to wonder why
making love
reminded you
of making war. I just
hung onto you
as if your life depended on it,
waiting for the moment
you’d return, relieved
that you did
return, wordlessly,
your mouth against my neck,
refusing to whisper,
silent as the smoke
rising from a field of ashes.



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